Rare is many worldwide/ Rare is strong every day/ Rare is proud everywhere!

Rare Disease Day is on 29th February 2020 and aims to bring together the 300 million people living with a rare disease worldwide and to represent the 6000 rare disease support organisations working towards more equitable access to diagnosis, treatment, care and social opportunity. Statistics show that 72% of rare diseases are genetic and 70% of those genetic rare diseases start in childhood.

Somewhere Inside I am Still Me

These are the words of Lin Allison who is living with myasthenia:

“You look well Lin, are you better now? I hear this from people I have not seen for a while. My standard reply is, you only see me when my myasthenia is under control, not when I am bed bound with it.”

Myasthenia is one of those conditions that is referred to as an “invisible illness”. Lin talks about the changes she has made to her life due to this rare disease: “Diagnosed six years ago, I am beginning to get used to the juggling and coping mechanisms needed on a daily basis to live a downsized version of my life with contingency plans always in place “just in case”. I have to be so careful when affected by other ailments as different medications can cause me to have what is referred to as a myasthenic crisis. This entails several days, sometimes weeks in hospital including intensive care and once you are really down it’s an awful long way to get back up!

I have found great help and support from myaware and although myasthenia can be a frightening and lonely place we all need to be positive and live each day as it comes. Somewhere inside I am still me.”

Currently there is no cure for any form of myasthenia, although the condition is manageable through treatment and lifestyle changes. One of myaware’s key objectives is to fund research to seek new information to aid diagnosis, ease life with myasthenia and ultimately find a cure for the disease. Myaware is committed not only to funding scientific research but also to supporting neurologists in the future with a specialist interest and knowledge in myasthenia.

Myaware is involved in supporting its members and the wider Rare Disease Community through Rare Disease Day 2020. Myaware Support Groups across the country are holding is holding support and awareness events to mark Rare Disease Day 2020, you can find out more by visiting our events page: www.myaware.org/events 

This Rare Disease Day, can you help more people like Lin by joining in our Fundraising Power Hour?

To do this, visit our Facebook page (https://www.facebook.com/myawareuk/) on Saturday 29th February between 10am-11am to make a donation through Facebook. If you do not have a Facebook profile, you can make a donation via our website by visiting https://www.myaware.org/appeal/donate or you can call us on 01332 290 219, Monday-Friday 9am-5pm.